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Author Topic:   Living with Cancer (from Cancer Survivors)
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(2)
Message 89 of 252 (755884)
04-12-2015 11:55 PM
Reply to: Message 88 by RAZD
04-12-2015 5:11 PM


Re: Update from what I know.
Hi Guys
I have been following your fight with this horrible disease and I my prayers are with you.
About 4 weeks ago I was found to have a olfactory neuroblastoma which is as it turns out is pretty rare. There is a thumb size tumour up in my left nasal passage. I am now slated to have the tumour surgically removed, hopefully soon over in Vancouver. After that I will get a round of radiation here in Victoria to see that there is none of the cancer left. Studies seem to show a 5 year survival rate of about 70%, so I like my chances. It helps also that I am otherwise healthy and am just a kid of 71. (19 with 52 years experience.)
I am fortunate that they can do the surgical procedure endoscopically and it is unlikely that I will require chemo. I am so sorry that RAZD and Asgara are having to go through such a prolonged series of treatment. If all is well I should be through the whole thing in 5 weeks. I sure feel fortunate.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 88 by RAZD, posted 04-12-2015 5:11 PM RAZD has replied

Replies to this message:
 Message 90 by NosyNed, posted 04-13-2015 12:36 AM GDR has replied
 Message 92 by RAZD, posted 04-13-2015 2:22 PM GDR has replied
 Message 94 by AZPaul3, posted 04-13-2015 9:28 PM GDR has replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(1)
Message 91 of 252 (755893)
04-13-2015 1:26 AM
Reply to: Message 90 by NosyNed
04-13-2015 12:36 AM


Re: Vancouver
That's very kind of you Ned. I should be back and forth the same day. Also I have a son in Lynden if I need a place to stay. Thanks a lot.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 90 by NosyNed, posted 04-13-2015 12:36 AM NosyNed has not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(1)
Message 93 of 252 (755927)
04-13-2015 2:34 PM
Reply to: Message 92 by RAZD
04-13-2015 2:22 PM


Re: Update from what I know.
RAZD writes:
Is that any relation to sticking your nose in other peoples business?
A little more rarely than how often this form of cancer occurs.
RAZD writes:
Don't remember if I've said before, we used to live in Victoria, our son was born there, and recently graduated with Master's in Architecture from UBC and is currently working in Vancouver. Lots of memories of walking trails on the Pacific side of the island and up and down the coast, skiing at Mt Washington (BC not MA) and sailing.
Should be time for the cherry trees to be blooming, although I've heard your climate this year has been very warm.
Hope for all the best, and hope that your sense of smell (and taste) remains as sharp as ever.
It has been a mild winter. No snow at all other than a few flakes a couple of times. The blossoms are all coming off the trees now. It is a beautiful place to live. I've been out here for about 20 years after growing up in Alberta and living 15 years in Montreal and 8 in the Toronto area, so this place is quite a treat.
From my understanding there is an olfactory nerve on both sides so I have probably already gradually lost the sense of smell and taste on the one side but if the radiation is done well I should keep it on the other side. There is also a risk to the optic nerve on the left side with both the surgery and the radiation.
However, as I said I am so fortunate compared to you and Asgara. Also I have had a wonderful 71 years so I have no complaints regardless of what happens. Frankly, my concern is for others in my life if this whole thing goes south.
Cheers

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 92 by RAZD, posted 04-13-2015 2:22 PM RAZD has seen this message but not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(3)
Message 95 of 252 (755947)
04-13-2015 11:41 PM
Reply to: Message 94 by AZPaul3
04-13-2015 9:28 PM


Re: Update from what I know.
AZPaul3 writes:
GDR, If you don't mind letting us know when you're scheduled to go in I would like to think on you throughout the day. It's kind of a prayer thing without the prayer thing. I would directly beam pleasant thoughts of Hagen-Dazs Chocolate ice cream at you.
You are indeed a man of prayer. Thank you so much. I ferry over to Vancouver on Wednesday to meet with the surgeon and then presumably I'll get a date for the actual surgery then. The surgery done endoscopically should be pretty straight forward except that they have to deal with the olfactory nerve and I don't know how much that might complicate things. It is pretty close to the optical nerve so there is some risk there which is also true with the radiation. However, as I said earlier I like my chances.
Thanks again for the prayers. God hears them all and even rewards with Hagen-Dazs Chocolate ice cream on occasion.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 94 by AZPaul3, posted 04-13-2015 9:28 PM AZPaul3 has seen this message but not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(4)
Message 96 of 252 (757431)
05-08-2015 6:49 PM


Surgery
Hello All
I am now home as of yesterday after my stay in the Vancouver General.
Friday, May 1, started out well when I was told that the results of the PET Scan had come back and that the cancer had not gone to the lymph nodes which had been a concern.
The ten hour procedure went very well so the first part of the journey has been a howling success. Essentially they removed an aggressive tumour from nasal passage and sinus cavity which had then gone through the cribriform plate and slightly into the brain. The type of cancer was a rare one called "olfactory neuroblastoma".
They removed about a gram of the brain and took a 2 diameter hole out of the cribrifome plate. They then replaced the part they removed with skin taken from a roughly 10 slice from my left thigh and some additional tissues from inside the nasal Cavity. All of this is being done endoscopically. The two surgeons were incredible with over 30 years of university between the two of them. I could not have had better surgeons. I have permanently lost my sense of smell but I still seem to have a reasonable ability to taste things, but it is definitely diminished. As the tumour was right against the eye there was concern that I might lose the left eye but there was no damage done to it at all.
Besides the tumour they took a little more around the edges and found no cancer in these margins so that is very encouraging. and as the surgeon said the surgery went very well.
It is possible that they got all the cancer, but as there is still a good possibility that there are individual cancer cells remaining so I will start program of radiation likely in early June although that hasn't been established. That may actually be the toughest part of the journey.
So all is well and God is Good.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

Replies to this message:
 Message 97 by RAZD, posted 05-08-2015 7:40 PM GDR has replied
 Message 98 by Tanypteryx, posted 05-08-2015 8:18 PM GDR has not replied
 Message 99 by AZPaul3, posted 05-09-2015 4:44 AM GDR has not replied
 Message 100 by Faith, posted 05-09-2015 6:40 PM GDR has not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(2)
Message 101 of 252 (757549)
05-10-2015 12:36 PM
Reply to: Message 97 by RAZD
05-08-2015 7:40 PM


Re: Surgery
RAZD writes:
There are a number of studies showing positive results from marijuana and tumor reduction, especially in the brain.
Thanks RAZD
My tumour was essentially a tumour that grew from the nasal passage into the brain, but I still think that your suggestion might be really helpful
I am going to ask the Cancer Agency about that and look for other info on my own. I also have a close friend going through cancer issues as well who is looking into this.
I found this other study which is interesting but I don't think would help in my specific case. It concerns the effect of PPI's on head and neck cancers but I don't think that the type of cancer they talk about is broad enough to include mine.
http://www.aacr.org/Newsroom/Pages/News-Release-Detail.aspx
Cheers

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 97 by RAZD, posted 05-08-2015 7:40 PM RAZD has seen this message but not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


Message 102 of 252 (757604)
05-11-2015 11:44 AM
Reply to: Message 97 by RAZD
05-08-2015 7:40 PM


Re: Surgery
While I was in surgery a family member of another cancer patient gave my wife this site to look at. I have never heard of it before. Do you, or does any of you other bright lights no anything about this way of dealing with cancer.
Here is the site that was given to my wife.
The DCA Site - Updating You on DCA and Cancer - Dichloroacetic acid and Dichloroacetate
Thanks

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 97 by RAZD, posted 05-08-2015 7:40 PM RAZD has seen this message but not replied

Replies to this message:
 Message 103 by AZPaul3, posted 05-12-2015 7:02 AM GDR has replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(1)
Message 104 of 252 (757712)
05-12-2015 11:44 AM
Reply to: Message 103 by AZPaul3
05-12-2015 7:02 AM


Re: Surgery
Thanks so much AZ. I enjoy this site for so many reasons but it is such a great place to go to get invaluable information such as this.
I would have gone through the cancer agency to see about this stuff but you have at the very least saved me the embarrassment.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 103 by AZPaul3, posted 05-12-2015 7:02 AM AZPaul3 has replied

Replies to this message:
 Message 105 by RAZD, posted 05-12-2015 2:23 PM GDR has not replied
 Message 106 by AZPaul3, posted 05-12-2015 4:50 PM GDR has not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(3)
Message 126 of 252 (758597)
05-29-2015 12:18 AM
Reply to: Message 125 by Asgara
05-27-2015 11:40 PM


Re: update
Hi Asgara
I'm so sorry to hear that the result was not what you hoped for. Where I live in Victoria there is a world class cancer centre. They also have a program called POG which is a last ditch effort to get rid of cancer.
It might be worth looking into for you.
Here is a link.
Personalized Onco-Genomics
All the best in your journey.
Greg

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 125 by Asgara, posted 05-27-2015 11:40 PM Asgara has not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(11)
Message 131 of 252 (787407)
07-12-2016 4:01 PM
Reply to: Message 130 by Asgara
07-11-2016 6:37 PM


That's great Asgara. Mine has gone well as well. The type of cancer I had, (olfactory neuroblastoma), often recurs I have been ok so far. I had the surgery in May 2015 and finished radiation Jult 2015. (No chemo.)
The 10 hr surgery I had with both an ENT surgeon and a neurosurgeon went really well and the margins were negative. I have had 2 MRI's since then and they have both shown clear. I continue to see the ENT surgeon every 3 months and that will likley go on indefinitely.
With all of the renovation done in my sinuses and in the cribriform plate below the brain I have not had many issues.
The radiation brought on some problems of which most have cleared up, but I still need surgery for a Zenker's Diverticulitum which will happen some time later this year which was likely caused indirectly by the radiation.
However life is really good and it is better to be looking down at the grass than up at the roots.
The future for cancer treatment keeps looking brighter all the time so I think we can still make 100 eh.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 130 by Asgara, posted 07-11-2016 6:37 PM Asgara has not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(5)
Message 134 of 252 (818133)
08-23-2017 10:31 PM


How is it going?
I haven't heard for a while how our friends Asgara and RAZD are doing. I am still in remission just over 2 years since the end of surgery and radiation and doing great. I hope that there is similar good news from our two friends.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

Replies to this message:
 Message 135 by RAZD, posted 08-24-2017 6:39 AM GDR has not replied
 Message 140 by Asgara, posted 08-24-2017 5:56 PM GDR has replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(3)
Message 143 of 252 (818296)
08-26-2017 11:01 AM
Reply to: Message 140 by Asgara
08-24-2017 5:56 PM


Re: How is it going?
Hi Asgara
It was good to get an update but obviously you are still having your struggles. The fact that you have such a strong mental attitude will carry you a long way as well. There is so much cancer research going on as well and they are making great progress. There are reasons to be optimistic.
Like NoNukes and Faith, my prayers are with you.
Edited by GDR, : No reason given.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 140 by Asgara, posted 08-24-2017 5:56 PM Asgara has not replied

Replies to this message:
 Message 144 by Phat, posted 08-27-2017 11:07 AM GDR has not replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(3)
Message 184 of 252 (844860)
12-06-2018 8:22 PM


I still appear to be in remission since my surgery and radiation in 2015. I did require 3 stents for my heart a couple of months ago, but I was very fortunate they caught prior to having a major heart attack as the main artery was 90% blocked.
That felt kinda stange as I'm not overweight and eat a fairly healthy diet but am falling short on the exercise side of things. (To much time on the keyboard and EvC. )
Bottom line is I feel great. There is for many of us a light at the end of the tunnel after cancer, even with a severe case as I had.
Here's praying it works out for you RAZD.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(2)
Message 227 of 252 (864149)
10-07-2019 11:05 AM
Reply to: Message 222 by RAZD
10-07-2019 1:07 AM


Re: Calling all survivors
I'm glad it is going well for you RAZD. It has for me as well. My surgeon in Vancouver found a small return of the cancer in my sinuses last spring, which the MRI didn't pick up, and so I went back for a quick 20 minute surgery and had it removed which went well. He had thought he found another spot but it turned out to be benign.
It is all going really well. I don't seem to miss the bit of the brain they removed, (guess I wasn't using it anyway ), and I am dealing fine without any cartilage left in my sinuses except for the little bit at the tip of my nose.
They keep checking up on me and I see my oncologist again this afternoon and I see my surgeon over in Vancouver every 6 months or so.
I hope that you enjoy your trip through Canada. I drove back out to Alberta during the summer through Jasper and it is sure a beautiful part of the world. My home town is Medicine Hat and as beautiful as it is here in Victoria I still feel more at home in big sky country in southern Alberta than anywhere else in the world.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 222 by RAZD, posted 10-07-2019 1:07 AM RAZD has replied

Replies to this message:
 Message 228 by RAZD, posted 10-07-2019 4:19 PM GDR has replied

  
GDR
Member
Posts: 6206
From: Sidney, BC, Canada
Joined: 05-22-2005


(1)
Message 229 of 252 (864200)
10-07-2019 6:01 PM
Reply to: Message 228 by RAZD
10-07-2019 4:19 PM


Re: Calling all survivors
I'll stand by for the breeze from your waft.

He has told you, O man, what is good ; And what does the LORD require of you But to do justice, to love kindness, And to walk humbly with your God.
Micah 6:8

This message is a reply to:
 Message 228 by RAZD, posted 10-07-2019 4:19 PM RAZD has seen this message but not replied

  
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